Elavil Feedback? - Interstitial Cystitis Network Support Forum

Brian · 06-06-2004, 06:21 PM

Hello Everyone,

I have just started on Elavil and am wondering if anyone could give me some feedback on how long it may take to work. (I have only just started it 3 days ago) 25mg. Once a day before bed. It def. makes me tired but I don't care about the side effects if it is going to help this tremendous pain and burning in the urethra (I have been checked for UTI's and have none)

I am also on Elmiron (3x a day for 3 1/2 months now) and Detrol LA (once a day for 3 months now) - I only have problems with pain, not frequency. I only go about 5-7 times a day, which is normal I guess.

Here's to hoping one of these meds starts helping soon before I go clinically insane.

-Brian

theclownster · 06-06-2004, 07:48 PM

HI Brian! I've been on elavil now about 2-3 months. It probably started to work within a few days - but not totally until I was on it a couple weeks. I have definitely noticed a significant difference being on it. The way that I can tell most, is when I accidentally miss a dose. I've also had to stop taking it per my doctor and those days become pretty yucky. I also take atarax 25mg before bed. I'm not sure if the elavil alone would have helped me as much. Personally, they both make me pretty groggy - not so much after I take them, but in the morning when I'm trying to wake up. I will say that the grogginess has gotten significantly better since I first started them, so hang in there.

I tried elmiron a couple times, but it just didn't work for me. Elmiron can take from 6 months to a year for it to help you. I also take Ditropan XL 10 mg in the evening time. I've taken Detrol La on and off - but have decided Ditropan works better for me. I was retaining when on the Detrol La 4mg and the 2mg was not a strong enough dose for me. I also use Prelief with all my meals and meds. It's really helped me a lot.

I do know that everyone reacts differently to different meds. It can be frustrating at times to figure what works best, but once you get it under control, life becomes much better - in fact, you start to feel almost normal again (never quite the same as before, but you are back to enjoying life again). Another thing that helps is to drink tons of water. I personally have found bottled water to be better then water from the tap. Be careful with bottled waters though - read the labels carefully because some of the different brands have additives that can irritate the bladder. The more water I drink, the less pain I seem to have sometimes.

I'll make a wish that your pain subsides soon and the meds start to help. If you don't notice any improvement in the next week, you might want to call your doctor and see what he/she recommends.

Take Care!
Sending Healing Thoughts -
Jennifer

***SharonA*** · 06-07-2004, 05:03 AM

Brian...Hello and Welcome to ICN. I am glad you found us.

I have been on Elavil since Dec. 2001 and am totally convinced that it is the reason why I am able to live an almost pain free life. My IC symptons before Elavil were totally debilitating. Now, I have what I refer to as "light" flares, occasionally. Nothing compared to what I had before. They do not last long, either. My doctor began me with 10 mg and I felt measurably better from the very first pill. Since it was helping somewhat, she upped the mgs over time to 50 because I was experiencing some "break through" pain. Over time, I have been able to reduce the dosage back down to 25mg. I find that I can not go any lower than that or I begin to experience flares after a day or two.

I could not tolerate the retention and dry mouth caused by Detrol so I discontinued it. Elavil, lots of water and an occasional Prelief or two are the treatments that work for me.

I do hope that you are able to find the treatments that help. Give yourself time to discover what works for you. Sometimes it takes a while before that happens.

Keep us posted on how you are doing...

vm · 06-07-2004, 10:57 AM

Welcome, Brian!!!

The combo of meds you are on has helped me TREMENDOUSLY!!!! I am also on Vsitaril. I began to feel really good at about a year after I started Elmiron. I began to feel a little better after a couple of months, but I was feeling pretty darned good at a year.

Iris · 06-07-2004, 11:39 AM

Hi Brian and welcome, must say I am also on Elavil 25 mgm at night, and it has helped me considerably. I get to sleep through the night now, which was rare for me. I am experiencing a much better life since I have been on the med, I am on a combination of Effexor XR and Elavil and Ambien. I could not tolerate Elmiron we tried twice and it made me worse, or Atarax. I know we all have different kinds of meds to help us with our IC, it takes a while to figure out which works best for each individual. Please keep us posted as to how you are doing, welcome once again Iris.

***yvette*** · 06-07-2004, 01:17 PM

Hi Brian: I have a love-hate realtionship with Elavil. I found it helped with letting me sleep thru the nite and an extra benefit: it kept my IBS at bay and could control it within 15 min of ingestion.

My hate for elavil comes from the fact it royally scewed with my metabolism...ack. It does take a bit to get your body accosomed to it...I'd say give it a couple of weeks to be sure....I had to deal with really gory nightmares when I first took Elavil.....and that fatigue....geeeez!!! Nightmares and fatigue both went away after my body adjusted to the drug.

Could you uro give you some harder drugs....just to get you ovet that *hump*....that hump involves getting your diet into shape and getting some sort of pain management. It just seems kinda nutty to just leave you sitting there, gritting you teeth...waiting for elavil, elmiron and all the rest to kick in. The worst your uro can say is no.

Good Luck!
y.